Its been a month

[navydad]

since the Rheummy had me on 3000mg of steroids to try and stop the neuropathy ragig through my body, alll it did was bring on a worse sinus infection then i had going in,, ENT cultured it and called the other day,, and told it grew enterobactor bacteris and another fungus which hasent gronw enough to be identified,, So now the slime that drains into my throat 24/7 is just thicker now and constantly choking me,, now its up in my ear,, its always popping and hurts like heck,,
  Well I saw another neuro,, and she had the results of my last MRO of my brain,, I saw on the repot anout a Chiara Malformation,, type1,, I asked her about it and she said its no big deal,, I wasent taken that answer as gospel, So I made a appt wit a bunch of neurosurgeons in ittsburgh to let them look at the scan and see what they say,, the nurse there said all chiaris should be checked out
Since the steroid fiasco,, my arms have gotten involved,, the burn and spasm constanly, in the mornings I have to heat up my clothes to put them on,, now any temp below 55 drives me to some type of heat,
I returned to work last week, its been surreal, the company doctor looked over my return to work letter from my GP,, and flat out told me,, you are not to climb ladders,, drive any kind of vechile while you are Government property,, no standing for more then a hour, so basically I just drag my self out of bed in the morning,, heat up my clothese,, heat up myself and drag myself too wrok,
  I need to get 30 days in before i can go back on my unions disibility,, then Ilm going to file for Social Security disibility,, I;m done working,, I cant do what I used to do,, and its almost wastefull for me to add more stress to my life by trying to work wheni know I cant
I went today to getmy new drivers license,, you need to have a photo taken, So I got behind the wheel of the car,, had to think about how to start the car,, get it  out of the driveway, jerk the wheel all over the place,, not feeling the pedals,, so I get there and I was next,, and the darn system shut down state wide,, these type of things only happen to me,, I swear it does,, so anyway I go home and just mull over what has happendd to my life in two years,,
  Lets see,, what else,, oh ya,, the rheummy want to try meon rituxin,, ya thats a good idea,, lets wipe out my T-cells, that would open me up to leprosy, or some kind of strang virus only known in Africa or something,
  The guys at wrok thought a screcrow came back to work, I am down to 128lbs from 160 wheni went out sick,, now I eat,, but I just keep dropping weight,, so m GP had me get the scope down the throat wednesday,, I thought,,, well at least I;ll be knocked out for a while and wont feel the constant pain i am in,, it went well,, and he took a few biopsys,, I am thinking,, ya take biopsys,, your not goingt o find anything,,
  the stuff that hs happened to me has been so sublte that I never saw all of it coming,, the slime in my mouth,, well its always been there,, its just worse now,, and they have no idea what to do about it,, I cant sleep more then ten minute before I am choking,, and in the morings,, my mouth and throat are so dry, the stuff has just clinged to my throat andmouth that i have to use a q tip to drag it out,, ya its that bad,, the neuropathy,, that what makes me so mad,, i knew something was wrong a year go when my feet burned for a month,, they all said,, well you know you have a bad back,, WHAT?,, so finnaly get the biopsy,, small fiber neuropathy,, SIGH,, well see another neuro a week ago,, she thinks graves disease,, LOL,, ok what ever you say,,
There are days that i am tired of living like this, whats the future going to bring,, do I end u in a wheelchair,, I mean I can barely walk now let alone feel hot or cold, I;m sick of fighting doctors,, Ilm sick of sinus infections,, the headaches that go around to the back of my head,, strage rashes on my head and arms,, eys that dont focus anymore,, oh I could go on and on,, but you all know the stuf I write about,, I tell my wife, if thee idiots I have as doctors had this kind of pain they all would run screaming to Mayo, or become drug addicts to stop the pain,,
Well I see hte neuro on onday,, to see if I have grves LOL,, I almost feel like ot going,, but I will, I need my MRI disc to take to Pittsburgh,, wonderhow I;m giong to get there,, I cant drive anymore lOL,
I know all about the gastroparesis,, I feel fod just slide through me,, and when do go to the bathroom,, I fel the food in me just slide down further,, most of the time all i have is alot of gas,, sorry,,
  My wife hs no intentions of finding out more about this disease,, she just thinks that if I am able to go to work,, then i must be ok,, she doesnt know that somedays I want to eat the front end of a gun,, my boys have seeen there dad go from a joyfull man who loved life,, to a guy thaat looks forward to nothing but going to bed early,, and getting up in pain,,
  I notice now,, it seems like it takes a few hours before I gtet most of my senses back, I cant smell anything in the morning,, I cant feel anything for a while,, then wheni do,, its nothing but pain, eat some pain pills,, go about my day,, praying it doesnt get to hot, it drives me inside,, and I used tolove the sun,, for me,, I would take 70 degress and cloudy year round,
well folks thats it for me,, hope veryone ishaving a good weekend,, I havent done a thing,,

[Billydude]

Wow Navydad.   I feel for you.  You are having a tough time of it.   I really hope you can somehow get on disability so that your full time job becomes managing your health.   Mine has become that.   I don't think I'm half as bad a you and I'm on disability.
Today was a bad day for me.   I just did a few minutes of gardening then went to the farmers market and was so exhausted when I got back I went back to bed and slept well into the afternoon and then  had trouble getting up.   I wanted to call someone and say come get me...something is wrong.   But,  slowly I came back to life.
Darn it all Navydad....you need to somehow stop working and focus on you.   You don't have the physical currency to spend on that darn job.
Wishing you well.
Steve

[lynnmarie219]

Navydad,


I'm so sorry that you are still not getting the answers you need to help you feel better. Its just not right that you are suffering so and cant get any help with your symptoms.

Wishing you luck with your next neuro appt. Please keep us updated on how you are doing....we do care!

[Cheryl]

Navydad,
   Do your 30 days have to be consecutive ones?   I'm impressed that you have made it a whole week.   You do have a very large cheering section here!  Hang in there.
Cheryl

[Dolly Dimples]

  Navy Dad, so sorry to read that things are still so bad with you.

       Isin't there anyone-- such as social welfare that can guide you to the right people to deal with your case.

        Here in the UK we have Social workers, or a great community drop-in place where we can get expert help in lot's of different issues..

     I can't believe that your so called medical help are so laid back about your state of health..

  Why don't you tell them to come on this site and see this is how desperate you are..

   Wish I could say something more useful, but know that we all wish you well and are in our prayers...
                                                              Chin up  (well try)  Dolly

[jonnell]

Navydad,  I feel so bad 4 you,  sending you a big hug from Jenna and I.

[irish]

navyman, Life is rough at your house and I feel bad for you. I have to admit that your letter had a little hint of irony and sarcascim that shows you can still find a little humor in life. With all the garbage that you (and a lot of us) have going on humor is a good thing.

I am hoping you do not choose to eat the end of a gun as you so aptly put it. I know that some doc must have told you to go to psychologist, etc so you could learn to live with your illness. So many of us have heard the same thing. Sometimes we just have to live with what is handed to us. I always figure that one of the only things we can do at times like these is to tolerate things the best we can and be a good example for our kids. I don't want my kids last memories of me whining and crying and not coping well.

Hope that you can get your pain under control and find things that will help with your other health issues. I would bet that it was a good thing for you to give work a try. This way you will have documentation from work about how you look and your ability to do things. Might make it a lot easier to get disability down the road. Seems unreal that the doctors can't pick up on how hard it is for us to work when we are so ill. Take care now and come back and let us know how you are doing. Irish

[gurs]

Wow-I have almost all your symtpoms down to a T?? .I feel your frustration. I've been to so many doctors and have had so many tests, its nuts. Each specialist will tell me something different??? I've been in bed for the last 2 years with the horrible neuropathy pain all over, bowel, bladder problems, chronic dizziness, head pain/face..gastroparesis, blurry vision, , body temp, extreme hair loss,feels like ive been poisioned. I cant take anything for pain because it makes me feel worse?
No one understands. All my MRI's come back ok??? been tested for lyme's and one doc said I have it, 5 others said its my sjogrens/lupus/hormones??? who do i listen to? I would try
antibiotic therapy, but my systemic yeast is sooooo bad.

Question....are you on any anti-fungals like diflucan? hope so...have you been tested for porphyria?

I just had my 2 courses of Rituxan...joints/pain actually worse right now. Hoping it helps with the neuropathy pain.

So sorry for all your troubles. I feel for ya! Don't give up.

gursie

[JJ]

Navydad,

            I really can't say anything that will make you feel better...heck can't seem to find

the words to tell myself for that matter. I keep hearing life is a struggle and the question

I have is "Why?" What exactly is the point...we are here...we were born..we've all worked,

loved, laughed, and most of us have made semi replicas of ourselves. What is the deal with

yanking that rug out from underneath us. The more I ask and think about it the more

nuts it gets. Why is it so hard for a human being to get the help they need, why is it our (in US)

President and his wife can go on a date to NY and I can't get health care...I am angry for me, I am

angry for you, I'm angry for my daughter as well as the rest of us. The only thing I do know

is I'm not willing to let it destroy me. I keep coming here and reading and listening and learning

from all of the SJS family...this is part of my strength...you Navydad are part of my strength.

To go through what everyone on here does on a daily basis and keep coming back and to hear

the fight...even when it's disguised as hopelessness, the fact we keep posting and venting shows

me that this a Family of fighters. I am proud to be in the company of people who do what needs

to be done and take it day by day and are willing to let one another lean when it gets tough.

Navydad, you have done that for me in concerns for my daughter as well as myself and I hope

that I can be as strong for you. I know this is not medical help but I hope it is heart help. Keep

on fighting!

JJ 

[Epson]

Navydad,

Haven't heard from you for a while, glad things are going so well, not.  I think it's a matter of finding the right doctor, not an easy task, but that's what it's going to take.  Like everyone else I'm sure your sick of seeing doctors, but what else can you do.  I think one day we will see you on a TV show like Mystery Diagnoses or I Shouldn't Be Alive.

Good luck in your search.

[Dolly Dimples]

   JJ, your post is so aptly put and expresses all that we here feel,

                                                                      You hit the nail bang on!

                                                                             Coulden't have put it better myself . Well done  Dolly x   
                                                       
             

[TerriJ]

Navydad,

I know you are having a really, really rough time.  Please try to hang in there.  There is great support here.  Sometimes I still feel I'm searching for answers myself.   Don't give up.

Terri